8 replies to this topic

[JRsBoo2]

Hi everyone, it has been years since I have poked around in here.  

 

My old user account no longer exists.  So I made a new one, I was just good old "jrsboo", am now jrsboo2.  Clever, eh?

 

So onto the update.

 

I have been at 0 with my pcr for quite a while now.  My oncologist is heading up a new study, a stop trial for Sprycel, it should be starting in a few weeks (4-6), and she is pretty sure I will qualify. 

 

You have to have two pcr's within 42 days of each other and each has to be negative.  Then I will stop the Sprycel, and be tested every month for a year (assuming no relapse), then every three months, I don't know how long for though.

 

The thought of being able to be off this stuff is so exciting!!!!!!!!!!

 

For those that don't remember: dx 9/2010, only at 29,000 at dx.  Fast response to Sprycel, but massive side effects.  Massive.

 

I have been taking less and less Sprycel and am now at only 20 mg per day.  I have had one or two significant breaks that I needed to just let my body rest from the side effects.  And I LOVED them.  I feel AMAZING without this stuff slowing me down.

 

So I am pretty excited.  The stop trial is nation-wide I think.  It will be headquartered here in Seattle at Fred Hutchinson Cancer Center (I see my doc at Seattle Cancer Care Alliance).  I don't think you need to be here to be in it.  

 

 

[gerry]

Wishing you luck with the trial.

[mlk210]

Jrsboo2  - I'm curious. How long into your treatment did you reach undetectable? When did you begin to lower your dose of Sprycel?

 

Good luck with the trial!

[Dona_B]

JRsBoo2,

Congratulations on the 0 PCR and good luck with the trial. It sounds like you had some bad side effects, would you care to go into more detail with your side effects?

 

I, too, am on Sprycel (80 mg) and very much interested in how things may look down the road.

 

Thanks again for the update and I look forward to more.

[JRsBoo2]

Hi Guys,

 

I reached undetectable in about 2 months.  I was diagnosed early, so not sure how unusual that is.

 

Side effects:

• Memory loss/cognitive impairment--these were severe enough to have to go on disability
• Bone pain
• Fatigue
• mouth sores
• muscle pain
• loss of hair (which got better, and then grew like crazy, as well as my nails)
• skin rashes
• digestive issues
• takes much longer to heal tendonitis and muscle tears

 

I am sure there were more, it was so much worse on 100 mg.  I then went down to 50 mg after two years, then after a year and half down to 20 mg.  

 

My theory is that they are going to find that at first diagnosis they will need to use a large dose, but then put us on maintenance doses once we hit better numbers.

 

Happy thoughts!  And happy Tuesday!

[Billie Murawski]

Good Luck with the trial,please keep us posted.      Billie

[DebDoodah22]

This is exciting! Thank you for sharing and keeping us informed!

[mlk210]

Thank you for sharing! I wish you all the luck on the trial! Keep us posted, please!

[Dona_B]

JRsBoo2

Thank you for sharing the side effects. I recognize quite a few of them, as many of the Sprycel users probably do. When asked how I'm doing I say my CML is under control, it's the side-effects. They interpret it as good news which it is, but sometimes that side effect mole hill can look pretty big.

 

Again, good luck.